A Practical Guide to End of Life Care (Edited by Clair Sadler) A Book Review

Introduction

Initially, I outline the target audience for the book, introduce the contributors and share my motivations for undertaking this review. This is followed by the substance of the book. The review ends optimistically, tempering serious themes discussed with an acknowledgement of beginnings. 

Beginnings

The target audience for this practical guide is those caring for individuals at the end of their life. This is primarily those working in end-of-life care, but the authors are careful not to exclude family and close friends who might be involved in this role. All contributors to the book were based at Princess Alice Hospice (Esher/Surrey) at the time of publication (2015). One of the strengths of this book is the different end-of-life care specialisms represented in this book.

I have three motivations for reading and reviewing this book. Firstly, at a philosophical level, the sixties mystic Alan Watts in his talks often referred to the value of meditating on our death.  More recently the Latin phrase Memento Mori (remember you must die) has increasingly surfaced on social media.  I had been very reticent to look into the ‘black box’ of death but recently felt emotionally ready to engage. My second motivation is far more personal. Clair Sadler the Editor of this book is my sister. The copy I have been reading she gave to me when the book was published.  In the inscription, she wrote ‘… I hope you think it is a “good” read.’ Clair, ‘it is a very good read’.  I am biased, but the only way I would know for sure was by reading the book. My third motivation relates to the second one.  In the past I recommended this book to friends, I did this with good intentions.  As my friends dealt with the emotional and practical challenges end-of-life care raises, my good intentions always felt a little crass.  Writing and publishing this post seems far less prescriptive, more passive and more sensitive.

How you begin to engage with this practical guide will be influenced by your motivation for reading.  The book took me far longer to read than I had anticipated.  The contributors emphasise the precious nature of time at the end of life and also the need for sensitivity.  They also encourage readers to reflect on the subject matter. In meaningfully reading this book you have to reflect. If you read this book abstractly, I suspect you will miss the point.  I found myself reflecting both on past events and events still to happen.  You need to be in the right frame of mind to undertake such reflections.

Endings

After the Foreword and Introduction, chapter titles helpfully employ questions. This is a practical guide and these are the practical questions you might want to answer. Initial chapters cover the meaning of end-of-life care, the people involved and their communications. I learnt that according to the Dying Matters campaign (please see links at the end) there are over 200 euphemisms for dying and bereavement. Next, there are chapters on the common physical and non-physical symptoms at the end of life. It was unsurprising yet reassuring to this lay reader that a patient-centred approach was favoured, typified by ‘the patient is the expert in what they are experiencing’ (Page 101).

I next learnt about help for the families and the influence of beliefs, values and attitudes on dying. My mental model up to this point had been that I was learning, reading about and engaging with the loss of life. On page 116 one of the complexities of end-of-life care hit me like a steamroller. Losses go beyond the loss of life. End of life care is about acknowledging and working with the loss of roles, the loss of a future and the loss of independence. For example, lost roles might include grandparents, friends or daughters and lost futures might be about holidays and adventures which were on the horizon. Lost independence is about acknowledging the increasing need for care from significant others.   The next chapters cover the last hours of life and practicalities after somebody has died. There are two final chapters on looking after ourselves and frequently asked questions which I will return to in the final section.

Stories of three families are used as illustrative cases throughout the book. These are Maria Brambila, Albert Hughes and Jenny Baxter.  In the early chapters, we get to know Maria, Albert and Jenny and then follow their end-of-life journeys.  The cases are well written and inevitably induced considerable empathy.  However, do not underestimate the power of this book to surface your real-life case studies.  Contributors emphasize the importance of boundaries for those working in end-of-life care.  However, for this lay reader, there were no boundaries as I processed memories and future anxieties.  I wish my processing had been exclusively altruistic, but some of the aspects of nursing took me back to personal experiences of hospital surgical care.  My point here is that it is difficult to abstract yourself from what you are reading and abstraction is not the way to go.

My specialism is organizational change a field characterised by uncertainties.  However, as a lay person, when I look into the world of palliative care, I begin to comprehend the real meaning of uncertainty.

… to help them have a ‘good death’. This is our goal but not always achievable and this can be difficult for us to accept sometimes. (Page 155)

I learnt that with all the will in the world you cannot necessarily orchestrate a ‘good death’. Each individual will experience a unique set of physical and non-physical symptoms with the severity and duration of these symptoms varying considerably. Practical guidance is offered to enable planning and strategies to address and even pre-empt symptoms, but uncertainties remain. Time is precious in end-of-life care, but again it is difficult to offer any certainty around a timeline of events. Again, practical guidance is offered, particularly around questions that are likely to arise around life expectancy.

As well as, for those working in end-of-life care, family and friends will be involved.  Family involvement can range from a child making sense of dying for the first time, to somebody grappling with their dementia whilst fearing losing a loved one. Who is involved and how they engage in these processes becomes another uncertainty? This isn’t just about the end-of-life care for the individual, it is about caring for those they leave behind.  A powerful reminder from Saunders (1989) is shared.

How people die remains in the memory of those who live on.

So, so true, yet I imagine profoundly challenging to facilitate those good memories.  In terms of place, this may potentially be in the home, in a hospital or a hospice.  This needs to be tempered with the care that can and perhaps needs to be provided in a particular place. Also, the availability of hospice beds becomes a consideration.

In the penultimate chapter the focus shifts to the carer in answering the question how do we look after ourselves? The chapter opens with a couple of powerful sentences.

Caring for people at the end of their life can be rewarding and enjoyable.  It can, however, also be really tough and demanding, both emotionally and physically. (Page 169)

Acknowledging doing potentially rewarding work, yet also emotionally and physically demanding work offers a philosophical balance.  Even after reading this book, I cannot fully empathise with my sister and those who choose to do such meaningful work.   There were some emotive passages in this book, but there was only one that poleaxed me.  It was a short case extract focused on a carer.

Since Erika started working as a carer, she never had any sick leave but today she has not come to work. She has texted one of her colleagues to say that she has had enough of looking after people and cannot be bothered to come in, she said they ‘owe’ me a sick day. This really is out of character for her. (Page 170)

More proactively the chapter addresses the very real challenges that may arise when providing end-of-life care. Setting boundaries, dealing with burnout, building resilience and mindfulness are discussed. But what comes through strongly towards the end of the chapter is the value of supervision and talking this caring role through with another person.  The concluding chapter addresses frequently asked questions.  I had actively engaged with this book, which isn’t always the case when I am reading. I was pleasantly surprised that I could answer these questions from what I had learnt from earlier chapters.

Endings and Beginnings

Inevitable uncertainties of end-of-life care were acknowledged in the previous section, but with that very real caveat in mind, I want to end more optimistically.  These two sentences offer readers hope.

Most people spend the majority of the last year of their life at home, often with support and care mainly coming from their families. (Page 114)

…more people die peacefully than don’t. (Page 155)

One of my motivations for reading this book related to reflecting on Memento Mori (remember you must die). On several occasions, this book spoke to my motivation, for example:

How do we know what we value in life? Perhaps we only fully understand when it becomes certain it is coming to an end. (Page 132)

At the end of this book, I didn’t have an epiphany around Memento Mori. I am glad that I made the time to read this book and engaged with the ‘black box’ of death.  This book was well written and effectively organized. That said, it wasn’t an easy read, but then again it isn’t an easy subject.  So, no epiphany, yet I found letting a little light into the ‘black box’ of death illuminating. I start every day with thirty minutes of meditation. After reading this book I revised my meditation practice by incorporating, a four-minute gratitude for life guided meditation. This may have been coincidental, or perhaps my epiphany was subtler than I had imagined.

Mark and Clair (not a recent photograph)

The slightly doomy woodlanddecay.com title for this site alludes to optimism. I do love woodland walking, particularly ancient woodlands. Whilst, the verdant new growth captivates and seduces us, woodland magic is happening beneath our feet. New growth grows out of the old-growth, before itself becoming old growth.  This cycle of life and the interdependence between the new and the old reassures me and gives meaning to the inevitable transitions in my life and the lives of those I love.

I acknowledged at the beginning that my sister Clair edited this book.  As I read and contemplated hidden family references embedded within some of the cases Clair, as well as, significant others were with me.   The black and white photograph was taken of the two of us at the beginning. Subsequently, we have both had to navigate and continue to navigate the many uncertainties and adventures everyday life presents.  In this sense, there is continuity with end-of-life uncertainties. Perhaps life prepares us to navigate some of the end-of-life uncertainties. There are endings, but thankfully there are also beginnings.

Reference

Saunders, C. (1989) Pain and impending death. In P.D. Wall and R. Melzak (eds) Textbook of Pain. 2nd Ed. Edinburgh, Churchill Livingstone, pp.624-31.

LINKS

A practical guide to end-of-life care

Sadler, C. (Ed). (2015) A practical guide to end-of-life care.  McGraw – Hill Education/Open University Press, Maidenhead.

https://www.mheducation.co.uk/a-practical-guide-to-end-of-life-care-9780335263561-emea-group

Hospice UK

https://www.hospiceuk.org/our-campaigns/dying-matters

Details and very accessible resources about the Dying Matters campaign are available on the Hospice UK website. The following extract from their website gives a flavour of the campaign.

Talking about death, dying and bereavement is hard. It can feel awkward or uncomfortable and sometimes, you just don’t know what to say.  Dying Matters is the campaign that’s trying to change that. Our mission is to break the stigma, challenge preconceptions and normalise public openness around dying.

Princess Alice Hospice

Further information about the Princess Alice Hospice based in Esher, Surrey and the services that they provide is available here:-

https://www.pah.org.uk

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